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Pain can cause dementia sufferers to act out

Carol Bradley Bursack of Minding Our Elders

Dear Carol: My mother has mid-stage dementia, as a mixture of Alzheimer's and vascular. Dad is taking care of her, and overall it's going OK as long as I go over to their apartment each day to help with baths, run errands and accompany them to medical appointments. What's troubling is that last week Mom fell against a cupboard corner and tore a gash in her shoulder. Dad called me immediately to see if we should take her to the emergency room. Mom said the injury didn't hurt but she was acting very anxious and agitated so we decided on the ER. We did the right thing because the doctor used a combination of stitches and bandages to fix her up, but when he asked Mom whether her shoulder hurt she said no. It was a bad wound and must have hurt, yet she couldn't remember falling, didn't know why she was in the ER and worse, she was uncharacteristically uncooperative and aggressive. I'm puzzled by her saying that the wound didn't hurt, but I'm also puzzled by her acting out behavior. Does dementia limit the amount of pain people feel? — MN

Dear MN: The short answer is that people with dementia certainly do feel pain. The fact that they may not be able to answer a direct question about pain is only an indication that their brain cannot connect the pain to the words we are using. You are being an excellent caregiver by questioning this issue.

A few years back I tracked several studies about dementia as related to the perception of pain because of my experience with my dad. His body language expressed pain or anger, yet when asked he just acted agitated. Long story short, once the clinician treated Dad for the underlying pain, his agitation and body language relaxed.

The studies that I found seemed to agree with my understanding of what Dad went through, and what I think could be happening with your mom. When people can't verbally articulate their pain because their brains aren't allowing them to understand the meaning of our words, their pain response will come out in other ways, such as changes in body language or in demeanor. Newer research on dementia is finding that much of the so-called "undesirable behavior," or "acting out," that happens when people live with dementia stems from their inability to express discomfort, whether it is physical, psychological, or emotional. This includes fear.

Sadly, drugging people who display these behaviors with antipsychotics has been common in the past and still happens more often than we'd like. Rather than automatically prescribing antipsychotics, clinicians need to determine what is causing the behavior and direct the treatment to that particular problem, which in some cases could be a type of pain for which any other person would be treated. I'd like to believe that most good clinicians are trying to do this, which is why your mom's doctor asked about her pain. That's a good sign.

Carol Bradley Bursack is an established columnist, blogger, and the author of a support book on caregiving. She hosts a website supporting caregivers and elders at Carol can be reached at